Medicine & Research

When multiple sclerosis is diagnosed at any age, there is a stage of mourning and uncertainty. Parents question what this chronic disease will mean for their family, work, and self-identity. The uncertainty lessens with time but having a diagnosis of MS erodes a person's confidence that he or she will be able to live a carefree life. When a child or teenager is diagnosed with MS, the effect is different. Oftentimes the parent may be more affected than the child or teen. Parents often have known someone affected by MS at a time when effective disease-modifying therapies were not available and the disease burden was great. In contrast, most children and teens come to the diagnosis without a basis of comparison. 

There are important, different implications of a diagnosis of MS in children and teens. Aside from the apparent difference, age, there are the developmental effects of an MS diagnosis when a younger patient is diagnosed. The diagnosis comes at a time that these young patients are still figuring out who they are and what they want out of life. A diagnosis of a chronic illness such as MS threatens to change the trajectory of their lives. Thus, one of the greatest supports to provide to a child or teen diagnosed with MS is forward momentum. The incidence of MS in patients younger than 18 years old isn't fully known. There are less likely 5,000 children and teens with MS in the United States. This is a strikingly small number when compared to the number of all people in the U.S. living with MS: nearly 1 million. 

Biologically, the disease is the same in children as in adults, and is almost always relapsing and remitting. MS is very often active in children. Whereas adults may have one or fewer relapses per year if untreated, children will have on average at least two per year if untreated. Children also recover better from attacks than adults. While this is reassuring in the short term, the burden of these relapses does accumulate over time, so prevention and early treatment of relapses is critical. 

Lifestyle and Psychological Support

How can a parent or caregiver support a child or teen living with MS? One of the most important elements of MS care is a healthy lifestyle. A healthy lifestyle includes diet, exercise, and sleep. While these are important for everyone's health, regardless of diagnoses, studies in pediatric MS have shown the higher the fat intake, the higher the "hazard" of relapse. In contrast, eating vegetables is linked to lowering the hazard of relapse in patients with pediatric-onset MS. Similarly, physical activity is linked to lower relapse rates in pediatric MS. Like adults, fatigue is an unfortunately common symptom of MS so focus on restful sleep at night is also vitally important. Sleep hygeine includes maintaining a regular schedule of bedtimes and wakeups, minimizing caffeine and sugar in the late half of the day, sleeping in a cool, quiet and dark room. Minimizing screen-time before bed (so difficult for teens) is imperative.

Psychologically, supporting children and teens is multifaceted. Emotional support is paramount, as the burden of the disease is too much to shoulder independently. But the support comes in many ways. One way is allowing for joint-decision making around topics related to their disease. Initially, this may be a frank discussion of how big the sphere of support should be. For many children and teens, they would prefer to limit the number of people who are aware of their diagnosis. For many parents, the opposite is true. Both patients and parents should be able to discuss their experience of this diagnosis from their perspectives. However, each should respect the wishes of the other.

Outside the Family

Another way patients can be supported by caregivers is with the choice of disease-modifying treatments. I like to remind patients that "No medicine works if you don't take it." For example, an oral disease-modifying therapy may have a proven efficacy in clinical trials. However, if one forgets to take the pill 50 percent of the time, it is not going to work for that child or teen; looking at other options is appropriate. Consulting with a pediatric MS specialist will ensure that all options for treatment of disease are available. A list of pediatric MS centers can be found at www.usnpmsc.org. 

Support for a child or teen with MS comes from sources outside the core family also. For many teens, the feeling of "I'm the only one" amplifies the stress and depression that can arise. Knowing there are resources available for interaction with other children and teens with MS can help, even if the child or teen isn't ready for interaction: 

• Oscar the MS Monkey (mroscarmonkey.org,) is a patient-friendly organization that offers education for kids and teens as well as parents and caregivers. They also offer a camp every summer where teens with MS ages 13-18 can come together for fun camp activities. Click here to read MS Focus' Spotlight article on this organization's founder, Emily Blosberg, and click here to watch their video profile on Mr. Oscar Monkey! 
• MS Focus provides educational materials, such as the booklet When Your Child Has MS. Receive a copy by contacting support@msfocus.org or call 888-MSFOCUS (888-673-6287)
• The National MS Society also provides education for caregivers, families, and pediatric clients with MS. Check out: nationalmssociety.org/What-is-MS/Who-Gets-MS/Pediatric-MS.
• For parents and caregivers, the Pediatric MS Alliance (pediatricms.org) is a valuable resource.

For each patient with pediatric MS the question of how and what to tell the child or teen's school comes up, and rightly so. Many children and teens diagnosed with pediatric MS have cognitive changes early in the course of the disease to varying degrees. This is certainly frustrating for the child or teen. Not knowing how to support the student can be frustrating for caregivers and school personnel also. A formal neuropsychological evaluation can help better identify strengths and weaknesses that the student may be facing. These results can inform discussions between caregivers and school personnel about how best to support the student.

For each of my patients, I recommend a 504 Plan - a formalized agreement between the family and the school specifiying accommodations to help the student. For many students this may be additional time for test taking, additional time between classrooms, or preferred seating in the front of the classroom. Even without neuropsychological testing, these agreements can be made. If the child or teen agrees with notifying the school personnel, I recommend starting a conversation early so the school can help to support the student.

For more information, visit: nmsscdn.azureedge.net/NationalMSSociety/media/MSNationalFiles/Brochures/HOM_2021_school-guide_digital_05-21_FINAL.pdf. 

Just as a child develops over time, the needs of a pediatric MS patient may develop over time. Keep in mind that what feels right in the first few weeks of a diagnosis may be different in the following weeks to months. Flexibility and frequent check-ins will help to make sure that everyone on the patient's team is aligned. MS should not derail any child or teen from his or her intended path, but accommodations for doctors' visits and medications are necessary to ensure success. We can all support these children and teens as they learn to thrive in a new context of having a chronic disease.